#sickbody, ankylosing spondylitis, chronic disease, chronic pain, disability, health, Invisible disease, open letter, sickness, spondylitis, spondyloarthritis

An open letter to healthy people from a former healthy person

188 Comments

Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic immune-mediated inflammatory joint disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

I am watching myself transform from a healthy, young, active, invincible woman to a sick, grumpy, defeated, disabled, immobile, needy person. I know what it’s like on both sides now – I’m on top of the fence. I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, definitely, but the other side of the fence is perpetually somewhere I’ve already been and can never return. My fence is a prison wall and I have multiple life sentences. I’m not getting out of this alive. It’s all downhill from here, you better believe it. Happy birthday, here’s another pain pill. Ready for narcotics yet? What about steroids? How’s your infusion this month? Oops, those side effects really took about a week of functioning from you, let’s try a new drug before that last one leaves your system and hope for the best.  We’re playing the medication dart board: bull’s eye on that last drug cocktail!

I can see it now, I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.

How terrifying to become something we’re all afraid of.

I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing? I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up. People have cancer, for crying out loud, you don’t matter as much. Big brother is watching and you don’t look sick and you’re too young for disability, why don’t you leave that for the people who really deserve it. Suck it up and go find a job (you’ll be dead in ten years).    (Here’s a picture showing how I feel about that)

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas…

Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us.

We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?

Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit too frequently. Home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. Home is where the heart is – broken and beating frantically in our throats during the MRI results. Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, or waiting in long lines for urgent care or a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects.  Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.

We, the people, fight in elections for our own versions of political and social progress while we, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of our precious sickbodies. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis and spasms and 28-years-old-turning-74-next-month. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of  witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.

We are not strong, we are not admirable, we are not role models because we woke up and chose to be.  We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior.  What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

Be with us. Remain with us. We were once leaders, friends, professionals. We did not change, our bodies did. We are leaders, friends, professionals. We are sickbodies, and we’re here until we’re gone.

Love us.

To learn more about Ankylosing Spondylitis, check out the Spondylitis Association of America website.

 

 

 

If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on and make me smile.

188 thoughts on “An open letter to healthy people from a former healthy person”

    1. Hi Sherry,

      Sorry it has taken me half a year to get to all these comments. I hope you’ll understand how overwhelmed I was with such a great response to this post!

      I love your comment. It’s like a book review, and that makes me happy.

      Charis

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  3. Thank you for writing this letter. I used to be healthy too. I know it’s like being experimented on. I’m not giving up easily tho. Stay resilient!

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  4. My husband and I have been married for 3 years, 2 years ago he became so ill it required a hospitalization…. a healthy man , never been sick till that day, 13 hospital stays, and fighting with SSD, its been a long hard road. He now has SSD and is on so many pain pills, he knows this will be what takes him, he is a shadow of the man he use to be…. 2 months ago I as diagnosed with SLE and now we struggle together, he with his CAP, and me with the SLE, This is not what we had planned for our lives, but it is our life now… we have each other to rely on. So many dont understand why we are in bed so much. How hard it is to function on days where its almost impossible to get out of bed. I am sorry for what you have to go through, I know its hard. Its hard to say good bye to the old life.We all have a story to tell, so many dont want to listen.. Thinking of you and hoping for a brighter tomorrow for all of us.

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    1. Susan,

      Thank you for sharing such a powerful story. I am finally getting to respond to people’s comments – half a year later…hopefully you’ll understand how overwhelmed I was by the response to this post.

      I am not normally one to promote my other blog posts when I reply to comments, but your story made me think of what I published just this morning (I swear I didn’t plan this!). I would love your feedback on it: https://beingcharis.com/2016/03/09/a-marriage-of-sickness-and-health/

      Blessings,
      Charis

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  5. What a powerful message Charis. Thanks for sharing it. I, too, have A.S. and I’m coming out the other side 🙂
    Hope your day is filled with wonder.
    b

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  7. I have just finished reading probably the most amazing post I have ever read. The honesty, the pain and the courage comes through clearly.

    I don’t have AS, but I do have “hidden” disabilities – RA and heart problems – and I know how it feels to get the ‘but you don’t look sick/disabled’ comments. In part it is caused by not educating people that disability does not equal wheelchair.

    I hope I won’t cause offence if I say you are an amazingly beautiful woman, your photographs are incredible.

    I wish you much happiness in your future, whatever it may hold. xxx

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    1. Hello Harry,

      My apologies for taking half a year to respond! Perhaps you can imagine how overwhelmed I got by the huge response to this blog post.

      Thank you for your comment and for your compliment.

      And keep fighting!

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  8. I am so sorry. I can’t help but think Lyme disease. But I have Lyme disease and think everybody has Lyme disease. However, if you can get a urine PCR test from IGenex you can rule it out. If, for some lucky reason, it turns out positive, the good thing is, it can be treated. It can be treated, but it takes a lot of money, the sad part. My heart goes out to you.

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    1. Hi GMD, That is a really good point. Sorry to hear that you have Lymes disease. My friends with Lyme disease have a lot of similar symptoms. One of the difficulties and delays in diagnosing SpA are the other diseases that have several of the same symptoms that need to be ruled out. Misdiagnosis and delayed diagnosis is a huge problem for people living with SpA, Getting the correct diagnosis is so important to getting the right treatment. I wish we had a simple & definitive lab test for SpA.

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    2. Hi GMD – I am just trying to go back to all these comments and respond, even though it’s half a year later.

      I definitely don’t have Lyme disease. I inherited AS from my father. While some symptoms are shared, there are many that are not.

      One of my good friends has Lyme disease – we share stories all the time!

      Keep fighting!

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  9. Thank you so much for writing this. It resonated deeply with me. I wish the public at large could understand. When I worked and someone would try to bully me into a weekend shift at another location and I said I was too sick, I got things like “you made it to work today.” That’s when I just turned to the guy and said “you’ve never seen me at home, alone, and screaming in pain.” That is just one example of many.
    I only have family left because even my best friend told me that she just doesn’t understand what I’m going through and threw away 3 years of being college roommates and a friend that I could count on. My heart is broken into a million pieces because people don’t understand invisible illness and when it is visible (like I need a walking aid), they’re uncomfortable.
    Thanks again for putting into words what my heart feels.

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    2. Hi Sarah,

      I’m sorry it has taken me half a year to respond. I am so sorry you are going through so much. Have you found a support group where you live? http://www.spondylitis.org lists those that exist across the country. It’s never fun to feel alone and to feel that family is the only thing you can run to, even though family is such an important support system to have!

      I send good energy to your heart.

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  10. Thank you for writing such a well-articulated open letter about what it is to be young and chronically ill! Like you, I’ve been grappling with autoimmune-related chronic illnesses and the scrutiny that one in these circumstances tends to receive from others who don’t quite get it.
    So, it’s heartening to see another chronically-awesome individual bravely, and with the right amount of humor and seriousness, ask others to reconsider how they judge those of us who didn’t envision this kind of life for ourselves, but are trying to live as fully and richly as we possibly can in spite of our diagnoses. 🙂

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  12. I am one of the sickbodies & I’m writing this through my tears; I wasn’t able to read all the comments because the pain became too much for me. I’m an empath & I not only get to feel my pain, but I get to feel everyone else’s too. I’m nearing 70 now, so I suppose many would think that becoming this disabled by pain is not so bad at my age. I’ve lived with chronic pain now for over 30 years; just in the last 5 it became more than I could fight off without help. So I’m now taking narcotics & muscle relaxers & I sleep too much, because in my sleep I don’t hurt, it’s only when I’m awake. I used to be a dancer & how I loved to dance. I used to work out at a gym 2 hours per day, 4 days per week. I used to love to walk, walking as much as 9 miles per day. Now I can handle maybe 20 minutes at a gym. I can walk almost a block. I haven’t danced in years. You all put to words how I feel. And, Charis, I too find myself sort of moaning with each movement in public & sometimes I notice people sort of giving me that look, the one that says, “OMG!!! What is WRONG with you???” And then there are the times like the day I let a woman & her son go ahead of me in the grocery line & mentioned that it would take me too long to empty my cart onto the counter. Suddenly, her teenage son was emptying my cart for me. I think that it’s more difficult when one is young & since I was a whole lot younger when the pain started, I’ve known both. People look at you & can’t believe there’s anything wrong with you. You all have hit the nail on the head. I’ve often said that I should make a sign to wear around my neck that reads, “Yes, I am disabled” so people wouldn’t act like my moving slower than them is just an old lady being annoying. Thank you for writing this.

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    1. Linea,

      What a powerful comment. Thank you for sharing these special details of your life here. I am glad my words resonate with you, even though I’m sad for the reason.

      Let us be as kind as we can possibly be – to ourselves.

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  13. A cracking read glad you wrote, so many bits I have heard myself say at times, kind of wondered if maybe I was a little crazy good to here similar thoughts from different people.
    Thanks Dave

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  14. Hang in there, sister Warrior!!! Though I do not suffer A.S. I do have low back issues (2 L5/S1 disectomies, and will probably end up having spinal fusion withing next 6-12 months.) so I DO know some of your pain, and the aggrevation you feel dealing with an “invisible” illness. I also know what it’s like to watch the person you love most go thru life dealing with 2 potentially deadly “invisible” illnesses, so like you, I have become a Warrior too!! In fact, I’ve just recently learned that my first name, Lora, comes from two arabic words meaning Warrior Princess. So I guess you could say I was “born to it.” One of the things that I’ve found so UTTERLY FRUSTRATING with this battle is the attitudes of those who are supposed to be helping us – – the Doctors!!!! In our situation, we are both in our early 50’s and receive SSD. We live on less than $1,700/mo. By the time we meet our immediate expenses, we have just less than $300.00 to procure groceries, toiletries, medications, co-pays etc. My husband suffers from Gastroparesis (stomach paralysis) so he is not only extremely restricted as to what he can eat, the things he CAN eat are more expensive. We also have to purchase protein powder monthly, as he usually can’t keep enough food down to maintain his body’s protein requirements. SO when you have a Dr. who you are REQUIRED to see approx. monthly, who tells you one thing during your face to face time with him, and you learn within 24 hours that what he told you IS NOT WHAT HAS HAPPENED, you would expect his office to be more supportive when you request a clarification. Instead what you get is the Dr. himself, dismissing you via his PA (you can hear him in the back ground.) while NOT even taking a moment to review your file, then you get put thru to someone else to schedule another appointment – COMPLETE WITH ANOTHER $50 CO-PAY- who treats you like MUD, telling you that you can see the Dr on a specific date at a specific time ONLY!!!! So yes, you are not alone, and we know your pain!!!

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    1. Hi Lora,

      I’m so sorry for the pain you must endure, with no other choice. As little as it helps, just remember you are not alone. We are all in this together, in a fractured way.

      Best,
      Charis

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  16. You made me cry this morning. Thank you for this. You captured exactly what I am trying to explain to my 12 year old son’s former teammates, parents, coaches, and teachers. My son was diagnosed last August with ERA and in July with Crohns and had dreams of being a soccer player. National coaches actually thought he was good enough that he had a decent chance which is really a rarity. Sometimes I think for my son, the memories of being healthy and running free on the soccer field is the cruelest symptom of all.

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    1. Shaleigh,

      You are so correct, memories are indeed the cruelest symptom (side effect?) of all. Memories that haunt us.

      I’m hopeful you were able to share this with your son’s former network. I hope he can still kick a ball sometimes, briefly, for that moment of joy. Because I still kick a soccer ball around every so often, and it still gives me joy (I played college soccer).

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  17. Your post was amazing! I have been diagnosed with AS for 2 years now…. Your post brought forth a lot of emotion. Trying to hid the constant pain from my kids, husband, co-workers, and clients…. I am a physiotherapist working with clients who have Arthritis. Who’d have thought??? I am not the worst off in the world, but do mourn the loss of being able to run, jump and play without suffering during and definitely after. Without my beloved running has come dreaded weight gain and decreased self confidence. I love your comparison to your body feeling “heavy” … It feels like I am weighted down in cement. Anyways, thanks again for this beautiful post!

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    1. Erin,

      I feel our stories are quite similar. My first job out of college was to help people with disabilities find jobs – and now here I am disabled.
      I used to be a runner. I still own the label even if it is shadowed, because I don’t know if I will be able to run regularly ever again.

      Keep fighting, warrior.

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  18. If I could jump up and down, I would be doing that right now as your letter is just breathtaking ❤
    Thank you for sharing your heart, and giving a voice to what it means to live with debilitating chronic illness.
    Thank you for sharing your beauty and your ugliness.

    -Peace and spoons for your journey
    aBodyofHope

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  20. Wow! This is the clearest description of my mental state that I’ve ever seen in print. Really hits home. Especially the grumpy part. The last few years, my patience with my children is near nothing. I snap and scream like a maniac way too easy. I try not to, but it’s like I can’t control it. There’s an exhausted, grumpy, lonely old man inside me that hates the world and burst through like the Kool-Aid Man. Afterward, I feel absolutely horrible and have serious Daddy-guilt, which puts me further into a mental funk.

    Besides what has already been mentioned, it is hard for people around me to understand the fatigue. Exercise does not invigorate me like it does them. When I go to the gym in the morning, I’m exhausted and need a nap that afternoon. If I play basketball during lunch at work, it doesn’t help me get through the rest of the day. I’m a zombie afterward. I feel that others often think I’m just being lazy.

    It is a daily struggle to deal with the conundrum of needing to stay active to keep my body functioning and somewhat pliable, yet being sore and extremely fatigued because of the exercise. Damned if I do, super-damned if I don’t.

    I was diagnosed with AS in my early 30s. It started in college with a sore neck (“you sit in front of the computer too much! Just roll these tennis balls on your neck and shoulders and remember to stretch!”). As my 20s progressed, my knees would feel like I twisted them if I walked or ran too much. Sometimes I would wake in the morning with stiff hands that I could barely close. I occasionally dealt with a “bad” back that would “go out” on occasion, then a couple times a years, then once every few months, and by the time I was in my early 30s, my back and neck were in a constant state of pain ranging from minor aches and stiffness to bed-ridden debilitation. Standing took a couple seconds before my body was straight. Getting up in the morning took a few steps before I didn’t look like a hobbled old man shuffling across the floor. I hated the night because I would toss and turn in pain after a few hours in bed. “This must be what getting old feels like.”

    That’s what I told myself. Until I realized that those around me weren’t “getting old” at the rate I was. I finally went to a specialist to find out if it was normal. And there my AS journey began.

    I’ve given-up so many activities that I once loved and push myself through the pain and exhaustion to keep the ones I can. At 40, I recently had to stop playing my favorite activity, beach volleyball, because running and jumping in the sand just inflamed my feet, legs and back too much. Ice afterward just wasn’t enough anymore. That was a sad day.

    I don’t know how I’ll handle it when I can’t play indoor volleyball anymore or snowboard. I know that day is coming.

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    1. Broken Spirit,

      Thank you so much for sharing your story. It’s so empowering to put it out there knowing someone will read it and accept it and understand.

      Your words in these two paragraphs are words I struggle to expand to create a blog post detailing the “damned if you do, super-damned if you don’t” experience:
      “Besides what has already been mentioned, it is hard for people around me to understand the fatigue. Exercise does not invigorate me like it does them. When I go to the gym in the morning, I’m exhausted and need a nap that afternoon. If I play basketball during lunch at work, it doesn’t help me get through the rest of the day. I’m a zombie afterward. I feel that others often think I’m just being lazy.

      It is a daily struggle to deal with the conundrum of needing to stay active to keep my body functioning and somewhat pliable, yet being sore and extremely fatigued because of the exercise. Damned if I do, super-damned if I don’t.”

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  22. Hi!
    I read this with tears in my eyes. You wrote down everything I feel but never could/wanted to let out. It is as if someone succesfully described a drawing I draw in my mind. I wish every human being would read this and finally understand how hard it is for us.
    I don’t suffer from AS, but from another autoimmune disease and it is really really hard to find understanding from the people around.
    Thank you for writing this! ❤

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    1. BB – please feel free to share this among any of your groups, I know how paralyzing it can feel to have these thoughts in your mind without the words to share them with the people who need to understand. Thanks for your support – I hope I can continue to put out the good posts!!! 😉

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  23. Thank you for writing this amazing letter!!! You’ve put into words so many feelings that are difficult to express to healthy folks around us.
    While I don’t have AS, I do have other autoimmunes, Lupus and Sjrogrens, and feel that your letter has given voice to all those chronic illness fighters that battle each and every moment to make it through to the next moment in time and I am grateful to you for championing our cause!! Sending you love, hugs & strength!!

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    1. Brandi,
      Thanks so much for your comment. You hit the nail on the head – my exact hope is that my blog gives voice to so many who can’t find the words to express the day-to-day struggle. Keep fighting!

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  24. Dear Charis,
    Reading your honest post was an important reminder for me, as a mother of an 18 year old daughter with AS, that even in periods of remission and relative quiet, that cruel ruthless illness is there. AS awareness is crucial so that the scientific world doesn’t neglect the search for a cure (nd they WILL find one!) and so that family doctors and orthopedic specialists don’t take years to diagnose AS.

    I would like to share the video my daughter made on her struggle with AS as a 16 year old, it has helped many, just as your brilliant post has.

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    1. Thank you for sharing this video again. I encourage people to watch it. I’m looking forward to the day when we can prevent children from getting the disease.

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  25. A warrior, you are. A hero, you are. A courageous woman, you are. Ok enough with the Jedi talk. I have been battling AS for over 20 years in which it has progressed to an advanced stage prior to getting on Enbrel. From my experience the biologics are most effective. It has enabled me to become more active and less fatigued. I’m lucky that I’m able to still work full-time as an engineer and carry on a fairly normal life. Recently I decided to improve the quality of my life and get my first of two hips replaced . Recovery is tough with the physical therapy especially for someone with AS but so far it’s looking promising as I see gradual improvement and milestones reached. I’m thankful for the support of family and friends and the fantastic surgical and postop care teams. Back to your first blog . It is a raw it is honest it is truthful it is ugly and it is beautiful all at the same time. Your carefully selected choice of words and how you arrange them are spot on. It was immensely frustrating to be a teenager and dealing with an old man’s disease as I used to call it. Something is wrong when you’re going to the doctor more often than when you’re going to baseball or tennis or soccer practice . Peace to you and I encourage you to keep writing . Seek a good physical and massage therapist particularly someone that is more holistic and naturopathic. Limited mobility causes muscles and tendons to shorten and therefore it is important to have manual therapy intervention to keep muscles elastic to alleviate spasms and improve function. One day after I recover I’ll have to try attending one of your support group sessions in Sacramento . I have learned a lot over the years and have a bag of tricks that could be helpful to many. For example there is a retired couple that invented a mirror particularly for those wood ASA and neck issues in general to help them see left and right when approaching an intersection without straining the neck. for example there is a retired couple that invented a mirror particularly for those would AS and neck issues in general to help them see left and right when approaching an intersection without straining the neck . Namaste.

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    1. I wasn’t going to respond as I simply don’t like to talk about my AS.

      But I need that car mirror! Can you point me in the right direction, please?

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    2. Your story is the perfect example of how different we all are with our diagnoses – some of us will have the ability to work until our retirement age (whenever that is!!!) and some of us will not be able to. Ankylosing Spondylitis is one of those diseases that cannot really be defined in graphs and charts and numbers and timelines, but one that we must look at in terms of individual stories. I’m so glad you are working and taking steps to improve your life all the time – how powerful!
      I hope you will make it to one of the Sacramento meetings, we are such a close family.

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    3. I’d love to know where to obtain that mirror also, as the arthritis in my neck has gotten worse & I’m afraid when I drive that I’m not seeing everything back there.

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  26. Thank you. As someone recently diagnosed with AS, I haven’t been able to verbalize my experience well to friends and family. But you did so beautifully and honestly. I’m sharing this with my loved ones, hoping they get a better glimpse into my struggles with chronic pain. Thank you!

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  27. Hi Charis. Thank you so much for writing and sharing this. I am 46 and was just diagnosed with Undifferentiated Spondyloarthropathy in June. Over the last few years, I’ve wondered what’s wrong with me as I’ve watched my ability to do physical activity decrease and my pain increase. I tried many things to get some pain relief: a chiropractor, trigger point massage, physical therapy. Nothing helped – it actually made it worse. It was a relief to finally know what is wrong and what I can do to take care of myself. But my hips, back, chest, neck and/or shoulders hurt all the time. Naproxen only does so much to help. The thought of taking other medications terrifies me. It’s been difficult to try to get my friends/family to understand what’s wrong and why I can’t do the things I used to do. I feel like I’m mourning the loss of a part of myself. I fear the unknown – will I get AS or not? how much more pain will I experience from this thing? But I get up everyday and do my best to live in the moment. I wish you and everyone else on here all the best. Please know that you are not alone. ~ Carol

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    1. Hi Carol, Sorry to hear of your recent diagnosis. Concern what the future holds is difficult. Hopefully being able to name it and talk to your doctor about a more effective treatment plan will help. Finding what works for you is the tricky part, but attainable. Just wanted you to know that you are also not alone. Some people feel their relationships with family members improve after their loved ones attend an educational seminar or education/support group meeting. The SAA office 800-777-8189 can help you find one in your area. I hope that helps. thoughts and prayers,

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    2. Hi Carol,

      I fully agree and support what Richard said in his comment. Do try and find a support group – they are so helpful. Sometimes just having someone who just ‘gets it’ is all you need to keep going through to the next day.

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  28. Your words brought tears to my eyes. Your last two sentences spoke such a truth. I am the mother of two teenage daughters with Juvenile Idiopathic Arthritis. I watch my daughters fight everyday to overcome what they did not ask to become. They have to push, work and struggle to live in their new normal. My oldest daughter struggled for 18 months in horrible pain until we finally got to an amazing rheumatologist who finally gave us answers and a name for what she had By time my youngest daughter starting showing symptoms we knew what to do and got her in much earlier. They are both amazing young women so push hard to excel in school, music and sports. I think it is hard to accept the new reality of life but in time you learn to live the best life you can and accept your good and bad days.

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  29. Hi Charis, Thank you for sharing so much of yourself. I’m such a fan of yours. I can relate to several of your feelings. I vividly recall being 28 years old and feeling 78 years old. I recall a speaker at our support group pulling me aside to ask me if anyone in the room had AS, because everyone looked healthy (I told her most of us can be really good at hiding it). Of course, I recall side effects that nearly took my life. Most of these type of feelings are memories. I still do need to catch myself -from time to time- for being ‘pain grumpy’ around my loved ones 🙂

    Thanks again Charis!

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  30. Well I was not expecting to cry this morning before I finished my coffee. I’m 30 and have been struggling with AS all of my 20s, and diagnosed when I was 27 or 28 (honestly can’t remember). I could not have said this any better. Especially right now as I am beyond sleep deprived.
    I’m so thankful to have found your blog, I have yet to find many women around my age who are going through this. Although I wouldn’t wish this on anyone, it is nice to have some company.
    If you are interested, you can check out my blog. I started it to push myself to keep living my life as well as I can.
    meganofthemountains.com

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  32. Not sure if my first attempt to comment worked so here I go trying to remember what you said the first time. I have friends well-meaning friends who suggested I should go and get a job. I had a great job that I loved but I can no longer do. Even though I was working from home I went from being able to work 10 hour shifts two four hour shifts 2-3 hour shifts and then eventually half hour to 1 hour maybe. And a half hour shift I’d have to take to have 5 minute breaks. Often times I would have a shift that I could not wake up for it wasn’t that I wasn’t crying it’s just that my body wouldn’t allow me to get up. Texting my coworkers asking them to cover my shift sometimes worked and allowed me to continue working for probably a year or longer then if I was working in an office. But eventually when new management came along they demanded that those of us who work from home be more productive and robot like working non stop taking calls back to back and eventually they let me go. It was devastating. And I’ll go through a couple of good days and thank ya I should try and get a job I could totally do this and then the very next day ban I’m on my back and stuck in bed or stuck in my recliner. I feel guilty for not being able to work in my mid-thirties. I have finally been granted disability but I will lose it once I move in with my boyfriend because it’s so low income kind. I’m hoping for CPP disability to also find the same result. Is so devastating to want people to find you disabled despite the fact that most days I’m trying to overcome that disability and make myself seem useful, I know that really and truly the things I can get done are for the most part to satisfy my own self esteem. It would take other people less time to get done what I can get done and they may be able to do a better job but I continue to try. I do some sewing and quilting and that has helped me maintain a sense of purpose in life but it’s still difficult when people say why don’t you just get a job. It’s not that easy who wants to hire someone you can’t count on. I don’t want to have to call my boss and say I’m sick and in bed and I can’t make my shift I’m sorry. I might be able to work 1 out of 7 days maybe. I have yet to find a bus he will say will you come in and do what you can do when you can do it and for as little time as you can as you need if you need to go home early you can do that. If anyone knows a boss like that please let me know. Really enjoyed your blog and will continue to fall you. And I’m sorry if some words don’t make sense I’m using talk to text because my fingers aren’t working well right now.

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  33. I get frustrated when well meaning friends suggest that I should get a job. I had a great job that I loved answering phones for roadside assistance. I have been doing this job from home for 8 years as slowly as my disease progressed and side effects from my anti.TNF meds I was unable to do my shifts because of my unpredictable fatigue that I had no way of controlling. I can’t in good conscience tell someone that I will be there for them that I will cover the shift they want me to cover because I don’t know if I will be able to when the time comes. No matter how much I want to do the jobs to do the work to do the shift I can’t control the fatigue and the fatigue can be debilitatin.
    Thank you for this blog post open letter I’ve shared it on my Facebook page it helps those go meaning friends can read it and get a clue. Some well-meaning friends with my boyfriend try to convince him that I’m not worth being with him because of my illness. But I am so grateful that he sees who I am despite my limitations. And on days when I have nothing to do but lay in bed because of the pain because my Humira stopped working he is very kind and did not bother me and waited patiently for me to be well enough to do the things we normally do let go for a walk along the beach. I cherish his words of encouragement and empathy. And when I was walking Oso funny like a Tin Man because of the pain in my SI joint he was kind and not embarrassed to be with me despite people looking at me quizzically. I am grateful to have him in my life.

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    1. Thanks for sharing pieces of your story with me, Hat. I’m sorry you struggle so and I hope my letter resonates with your friends. I’m so glad you have such a supportive partner in your boyfriend.

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    1. Hi Bob, I’m also reticent to share how I am feeling with friends and family. Thankfully, there is someone in my family that it is easy for me to say “wow, I’m having a tough time this week” and they get it. Not sure why that helps, but it does for me.

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      1. I have some very good friends who mostly understand & I can tell them about it when it gets really bad. I think that it helps because it’s like sharing the burden. I don’t have to carry this all on my own. When I don’t let it out, I tend to sit & dwell on it. So sometimes I just talk to my dog & 4 cats; the kitten isn’t a very good listener yet as she just wants to play with my necklace. 😀

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      2. Thanks to those who responded to my comments. I can’t seem to reply directly to you .This is such a profound and important blog. Thank you again to beingcharis.

        Sent from my iPad

        >

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  35. I love cutting the grass, shovelling snow, or puttering in the shop. Or I used to. My tools and garden utensils are not neatly stored. This is a minor part of my declared Ned condition over many years. Yet knowonein my circle of family or few friends has any idea how tough it it is. I wish I was brave enough to copy your blog and send it to them and say: hey, that’s me, at least understand I’m trying.

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    1. Bob, I hope you never give up on the things you enjoy even if you make a mess of your tools and toys. Moreso, I hope you are able to find the courage to share this with those closest to you – they may surprise you.
      Keep fighting, you are NOT alone.

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  36. I ended up with AS at the end of my 20’s (I’m now 63). It happened just at that moment when I was starting to think I was getting things right (education, career etc). Then, wham!! Stop! Cripple time. Eight long frustrating years later it went into remission (as they said it would), but during that time I felt like a waste of space. I didn’t feel attractive. I wasn’t as active as other people. And the drugs just put you in a bad mood anyway. At one stage it developed into clinical depression. Things generally were awful.
    Luckily for me though, not long after being diagnosed, I was added to a treatment and therapy group at a hospital (here in Melbourne, Australia) which had an academical connection to the centre of research into the disease (Bath Hospital, England). There was a good and bad side to that in that you could compare yourself against others and judge where you were actually at. I was then at the early stages and, while I went along with all the exercising and hydrotherapy, being around people in the advanced stages of the disease drained me of any optimism for my future.
    When it finally went into remission it was hard to break out of the sicky-type mould. But because I was not a car driver I started to feel I could cover longer distances on foot and on my bike. And then that became a challenge. I got a job in the government, fully expecting not to pass the probation period, but it flew past too. Then I met my wife – then we bought a small house (our first) – then we were pregnant. The rest is a very happy history and one I’m am ever grateful for. I remember sitting on a friend’s back porch towards the end of those eight years and breaking down in tears because I didn’t think I would make 45. Well I smashed that one.

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    2. Hi Kevin, thanks for sharing some of your story. I can relate to much of what you wrote. Although we all have a lot in common, each person has a unique experience. There were times when the future seemed very dark. I think it’s particularly difficult to be young and in tremendous pain and wonder how bad things can get. ‘If I’m this bad now, what will life be like in 10, 20, 30 years?’. For some of us, we find a way to have a very happy, fulfilled life. For me, some years were much better than other years. What a pleasant surprise to have less pain and generally healthier more active life in my 50s than my 40s. Unless a person goes to a support group and meets others with SpA, they don’t always see and hear that type of experience. Thanks again, Kevin, for sharing and good luck 🙂

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      1. I still think all SpA patients should be tested for Lyme, possibly with a urine PCR test from IGenex. i had similar symptoms and I have Lyme. If you can afford it, Lyme treatment works.

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  37. Pingback: (836) | suburban-poverty.com

  38. Wow! Your blog is so powerful and full of the feelings we all have…I wish so much that my 74 yr. old rheumatologist could read this blog! I’ve been trying to find somewhere in her information a place where I can send posts like yours so she can start remembering again, and have empathy for, her patients like she used to have instead of dismissing me like she did at my last appt. She actually told me “I’m too focused on my disability!”. She needs a good kick in the ass. A post like yours would give her that. Thanks for sharing and for listening!

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    1. Doreen,
      I often say we are collaborators, rather than receivers, in our relationships with our healthcare teams, and it is never fun to feel we do not have the support we need from those we feel we should trust the most with our care. I’m sorry you are having this struggle. Let me know if you find a way for her to read it. Maybe take a printout to the office?

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    2. This was a great post because it shows how limited some doctors can be. You MUST take control. Fire your doctor, fight back. I’ve fired two now. The first one nearly caused me to be paralyzed… it’s MY body, my life and you don’t have to accept poor care. (Always remember, “there was someone at the very bottom of a graduating class – was it your doctor?” haha)

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      1. Thank you Sher,
        I have fired a couple doctors as well. It takes strength to fight for your health privately, even more strength to fight for your health with those who are supposed to help the most.

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  39. Dear Charise
    Your words was a way that we all feel with these offal diseases, I have fibromyalgia, Musculoskeletal disorder and sever nerve pain. I know what it’s like as I was healthy, vegetarian, and used keeping fit as a way of dealing with stress. I have never took alcohol, cigarettes or drugs. I took an occasional pain killer and pantaprozole for hiatus hernia, but nothing else. I could not believe how I became so ill I could not wear clothes, sleep and the pain was so bad from nervous system, joints, mussels and fatigue too. I was diagnosed in 2005 at the age of 35, with fibromyalgia but other health issues caused me to go down hill. I was misdiagnosed by 4 doctors with Asama then chest infection but it was pneumonia, I was rushed into hospital with my heart enlarged and fluid in my lungs. I can look ok on the outside but dying in the inside, but because people cannot see your illness they don’t understand or they look down on you as a inconvenience to everyone. I don’t know from 1 day to the next how I will be but since 2012 with pneumonia I have struggled to walk on top of everything else. I came across Low Dose Naltrexone, It tricks the body for 2 hours thinking your body has no endorphin’s and the body sends a lot of endorphin’s, which helps pain relief, makes you feel better and gives more energy. We don’t have it licensed in Scotland so I pay a private clinic. I have came off my morphine patch which was my main goal as it was affecting my lungs and bowel. I have less pain in my hips, and a little more energy but sadly still not got the quality of life I would like. I will not give up as I have faith that the lord will guide me and pray that there will be a cure for all of us soon. The Musculoskeletal disorder is in my chest an I’m now struggling with that, as breathlessness, nerve pain and fatigue is still destroying my physical and mental health, but I take 1 day at a time as that is all I can do. I hope to go back to University this September as I had to leave twice due to my health, so this is my last chance. I will pray for you and hope you get more help, love, treatment that is better than what you are receiving just now. Please take care and God bless you!
    Gail

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    1. Gail, wow! Thank you for sharing so much of your fight with me. I am always overwhelmed by all the human body can handle. I hope you are able to find some sunshine somewhere, somehow, in the midst of all this you are fighting. I hope these words help people understand a little more what we warriors feel daily. Peace be with you

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  40. Hi Charis, I am a former Meredith Angel who saw your post from facebook. Thanks for sharing your vulnerability and beautifully written post which is a great reminder to those who are healthy and don’t understand what it’s like to live with an “invisible” disease. My daughter has an autoimmune disease as well. She was diagnosed in April of this year. She has lost almost half of her hair on her head. After doctors told us we could try steroids, but really, she will just have to live with this forever, I started doing research. I am not claiming to have all the answers, just wanted to tell you what is working for us and about the hundreds of testimonials I’ve been reading about countless people who have debilitating autoimmune diseases and are now getting their lives back. I joined a facebook group called “Autoimmune Support” and it is a really wonderful community. I have also read The Autoimmune Solution by Dr. Amy Myers and The Paleo Approach – Reverse Autoimmune Disease and Heal Your Body by Dr. Sarah Ballantyne. Both amazing books with similar plans. My daughter and I have recently started following these plan to heal the gut. It’s worth the read and you can decide after reading at least one of these books if this would be right for you. Again, I don’t want to claim all the answers, but the testimonies I have read are such an encouragement. I hope I have been able to encourage you. I’m praying right now that you will find healing and hope for the future. Believing with you that there is hope! Blessings, Alyson (MC class of 1990)

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    1. Alyson,
      I am sorry to hear of your daughter’s diagnosis. How scary for you and for her!
      Thank you for sharing some of the ways you are approaching this; I hope your journey with your daughter finds a path toward healing (and a cure!).
      Keep flying high, angel!

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  42. I will have to get my friends to read this…you have explained just how I feel. I wasn’t diagnosed until a few years ago (I’m 61 now)…I must have had AS for years but as it was always said to be a ‘male disease’ it was never confirmed. Thankyou…..Yours is the first blog I’ve ever followed.

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    1. Fleur, I am hopeful this helps your friends understand! Feel free to let me know how they react.
      Also, congratulations and thank you for choosing mine as the first blog you’ve followed! I’m honored and a little nervous 🙂 I’ve set the bar high with this post, haven’t I?!

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  43. Wow, thank you for your honesty. I also have an auto-immune disorder and other chronic health problems, and I grow weary of people telling me I’m too young to be sick. Really? That doesn’t help. But spending time with folks who do understand and who do care, and making time and space for meditation and prayer usually helps me keep my equilibrium, even when I feel like “death on a honey bun.” Blessings as you travel your difficult road — you are not alone, sister Meredith Angel!

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    1. Donna, indeed it is so helpful – crucial – to find a group of people who understand. It feels amazing to be able to slip into a place of honesty and know the people around you just get it without you having to explain. Keep flying those angel wings, sister.

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  44. Wow. This is incredibly insightful. My daughter who is 6 years old has AS. She is an “anomaly” as we are told. Thank you for putting in words what I SEE her feel and struggle with. We will continue to fight with all of you. I hope you find the right mix of drugs to bring you some relief, that is what we are working for with our little one.

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    1. Emily, I am sad to know of your daughter having AS but I am glad to know she has a diagnosis early. I’m fighting for all of us with my brutal honesty and I dearly hope it helps tangibly.

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  46. KICK A.S.s. What a glorious piece. You captured so many of my feet on this subject, on this process, on this disease. Congrats on your blog. Keep up the good & hard work.

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  47. Pretending to be healthy is tiring. Like a fish trying to ride a bicycle.
    Being unhealthy hurts. Like a fish flopping on the sand, longing for a return to water.
    Seeking a cure is dangerous, for that drug is like biting a baited hook, the consequences can kill you.
    We swim alone, as our school has left us, not worthy of community, no benefit to their survival.
    Even our predators ignore us, for we are not the good food, the good fight, the fun swim.
    Only when the waters dry and are gone, will we become equal in measure, in death.
    Until then, we swim alone…waiting for what ?

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  48. I love this! I have been ill partly ‘forever’ and partly since I was five, but I can still remember, vaguely! Sitting in a trolley seat in a supermarket and laughing. My mum told me that was about 7am. I can’t get up early anymore and I miss it. I tried alarms and the early morning light is so beautiful! Refreshing and just… Right. But being woken up makes me much worse so I rarely do it anymore. My point is that you’re right- I love early mornings and exercise (even though I can barely remember my ‘healthy days’) I just can’t enjoy them. Inside we’re a lot like everyone else. Only stronger. Because of what we have to put up with.
    Stay strong!!! And sorry for the long comment, I keep doing this!!! (;

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  49. Hi Charis,

    I am sorry to hear of your struggle with AS. I don’t have ankylosing spondylitis but I know how to pronounce it. Why? Because my husband, his father and sister and now one of our six children (she’s 15) all have it. In fact my husband has iritis in both eyes right now. We think that genetically speaking, they all have a less severe form of it. But they also all control it with diet. I have no idea what you’ve tried so know this is said with love and concern and not naggy-ness at all:) But my husband and daughter follow a gaps diet. No dairy, very little sugar, no potatoes or corn or flour. When they follow this diet, my daughter and my SIL need so medication and my husband goes from 24 advil (he doesn’t bother getting refills of indocin from his rheumatologist ) a day to 2. Its a hard diet sometimes but my sister in law was able to have two children without taking any anti inflammatories during either pregnancy. Anyway, perhaps you’ve tried this already and you still are symptomatic. But I didn’t want to NOT share this in case you had not heard of eating this way to try and control it. Love and prayers your way. Its a hard disease because you look “normal” and yet no one knows how it hurts to sneeze or the stiffness when you wake up or the pain of inflammation on your eye. We look at our other 5 kids and wonder who may get it still. But hopefully watching their dad and sister eat this way will be encouraging to any of the other kids that they can manage it too. Best of luck to you:)

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    1. Thank you, Amy. I am sorry you and your family is so affected by AS. Thank you for humbly sharing your experience about diet, and mostly for understanding how sticky it can feel to both give and receive advice/suggestions/options/ideas for treatment. I’m so glad you could relate to this post.

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